Everything Appears to be Normal

Everything Appears to be Normal

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Anyone suffering from EDS or a similar “invisible” illness can understand how frustrating these words are.  The event that finally made me start this blog involved hearing this from a cardiologist who two weeks earlier had told me that I had a hole in my heart.

The experience I’ve had with this doctor deeply saddens me, but also strengthens my resolve to become a physician who respects and believes in my patients.  Upon first meeting Dr. Norton (name changed to protect his identity), he failed to take a few minutes to ask about my life and try to connect with me on a personal level.  In all experiences I’ve had with physicians, both as a patient and while shadowing, this has been key to providing the best care possible.  You cannot effectively treat your patient if you do not know them, if you fail to understand their lifestyle and how it is impacted by their symptoms.  Cookie-cutter patients just don’t exist.

I received a copy of his notes from this appointment and saw that there were multiple errors caused by his failure to ask important questions about the history of my symptoms during the exam.  When he told me I had an Atrial Septal Defect (ASD), he in no way explained what it was and simply told me we would do an echocardiogram with a Bubble Study.  Because he didn’t bother to get to know me, he assumed I was just an uneducated patient who wasn’t deserving of an explanation because it would be a waste of his time.

I spent the next five days or so thinking my life was about to change drastically, that I would have bypass surgery and a difficult healing process that would be worsened by the EDS.  (Understand that I had to do my OWN research to find this out, because he didn’t bother to tell me what complications accompany such a defect).  So when during the test no hole was detected, I was speechless.  As it happens, he couldn’t actually diagnose the ASD until performing the test, and therefore put me through all of that emotional distress for naught.

My most recent encounter with Dr. Norton involved a stress test I had done a few days ago, which was the last straw.  After the test he told me my results were above average compared to his typical patients (most of whom are double or triple my age with congenital or other heart problems), and that I seemed perfectly normal.  When I asked him why I get dizzy doing lunges and squats during workouts, his answer was that perhaps I wasn’t in as good of shape as I used to be (keep in mind, I’m a 22-year old woman who lifts weights 4 days/week).  He then suggested that maybe I should warm up before I work out, but if he’d taken that time to get to know me he’d know that I have an academic background involving health and exercise and I’m smart about warming up before a lift.  When I asked him to explain why I suffer from unpredictable presyncope, dizziness, shortness of breath and tunnel vision, he said I’m just going to have to live with it.  He continued to provide essentially one-word responses to my questions; answers that insulted my intelligence and offended my lifestyle.  The appointment ended with him announcing that there was nothing more he could do for me.

And he’s right, there is nothing more he can do for me.  I’ve been so fortunate to have met with almost exclusively wonderful doctors who respect me, understand that I am well-educated in topics relating to healthcare and believe me when I say something is wrong.  But when I do encounter a physician like Dr. Norton, I’m not willing to roll over.  I’ll keep looking until I find the right cardiologist who is capable of getting to know me as a human being and taking all of my symptoms and my lifestyle into account.

I’m not sharing this story to complain about a crappy doctor (okay, maybe a little).  I’m sharing this because there is an important lesson to be learned: YOU ARE IN CONTROL OF YOUR HEALTHCARE.  YOUR DOCTOR WORKS FOR YOU.  No one knows your body better than you do, and it is important to trust yourself when you think something is wrong.  As a future physician, I can tell you that doctors do not know everything and one doctor is not right for every patient.  If you’re not happy with your treatment plan or the outcome of a physician encounter, then change it.

It’s time more people start taking control of their healthcare, and it’s time more doctors start personally investing in the lives of their patients.

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3 thoughts on “Everything Appears to be Normal

  1. Rightly said! I have observed how Doctors have the tendency to throw big words at you and then move on without so much as an explanation or show utter impatience at having to dumb it down for ordinary folks. They forget that we have access to the big bad web and that we will research and catch up with them. I’m glad to know of your resolve of being a better sensitive doctor. Kudos to you. I handle social media communication for a medical school and I think I will be sharing this post on our FB page..keep writing!

    Following you. You can find me at http://beingnenne.wordpress.com/

    1. Thank you! I’m grateful to have this perspective on medicine, and I’m hoping I’ll be that much better of a doctor because of it. If you think my insight can help others, then please share!! 🙂

  2. Hi,
    Thanks for the like at my place. I have an atrial septal aneurysm–written as interatrial–which was spotted on my last echo, but not on my previous ones, and the new doc never even mentioned it. I have a post about it–not sure if you saw it? http://wp.me/p2Enyb-nV Btw, I have type II (classical EDS) with some type of VEDS overlap (neg. test) and have no clue where this thing came from and am not convinced it was congenital at this point. I did finally get a call back from the rude nurse after I posted on my blog and was told that the doc said it was a benign finding in 5% of people. I don’t have a shunt (the hole), but I know this is from EDS and glad you helped confirm that a bit (sorry you have it!) as it’s more common in Loeys-Dietz, which I in no way have. Regardless, we are at higher risk of ischemic stroke, so you don’t have to worry about bypass surgery, but there is a Hx of ischemic stroke on my EDS side of the family, which is a little hard to trace back. Not sure if you have that, as well, or if your EDS is genetic or a spontaneous mutation?

    Oh, I bash doctors on my blog right and left. I have sub par healthcare where I am and no one has a clue about EDS and my vision is largely gone due to them not diagnosing my keratoconus (KC) in a timely manner as there is a surgery in trials that halts the progression, which I had, but my KC had advanced too much and I’m stuck with low vision now. So, just blind over here on my adapted laptop! I commend you on your efforts to become a DO and make a change in the system; it’s needed.

    I’m much older than you, but most doctors generally don’t care for any patient who is educated and can use big words and I’m starting to deal with doctors who are younger than I am now with huge egos, which makes me want to hit them so they get fired. I am educated and have MDs in my family and I also Dx’d the EDS myself like you did after a misdiagnosis for 11 yrs, which I would never have figured out if not for my corneal disease. I have mild joint involvement and am not bendy like most, but have definite EDS features that are not well spelled out in the literature and did see a geneticist. What a failure of the system! Btw, your type is rather common compared to mine which is why all the bloggers have HEDS! I’ve seen it as low as 1:5,000, but agree too many are misdiagnosed or never diagnosed. I would say this is even more true for those of us who have classical EDS.
    http://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=EN&Expert=285

    Well, long comment. I also write long posts and very infrequently now. I’ll bookmark you and welcome to WP!
    A 🙂

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